The Time I Held My Daughter, Sang and Cried at a Disney World Breakfast Buffet

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The story begins in Disney World at the all-you-can-eat breakfast buffet (DWAYCEBB). How we got there is another story involving the finest colleagues you could work with, but that’s for another time.

It was a normal breakfast. I know the DWAYCEBB isn’t normal, but the breakfast experience itself was normal for us. I was trying to eat, stop Caleb hitting people with Scar and avoid the Mickey waffles Ellie Mae was sharing. I wasn’t managing any of it.

Ellie Mae was upset. That’s not unusual, she’s often uncomfortable and upset. She can’t scream and shout, and I’m sure if she could, we’d never hear the end, but she was crying. It was enough to disturb those near us, not to impact the whole restaurant.

Lynsey comforted her but nothing was working and Caleb was restless. The biggest issue with Caleb’s mealtimes is his consistency. He only eats sausages, he’s consistent, unless he’s decided only to eat stuffing. This week he is eating potato waffles; I have no idea why. So for breakfast he’s having “tea” because waffles are “tea.” I think that’s all understandable.

He won’t eat sausages with potato waffles, and he has to be watching “Planes” on his tablet and the TV or he wont eat either.

Unless he’s watching “Ice Age” that day.

The point is when enjoying the DWAYCEBB, Caleb isn’t the company you want. Once he’s finished his sausage, the meal’s over, and you’d better be ready to go.

Lynsey took Caleb to get changed for swimming and I comforted Ellie Mae. Caleb likes swimming, unless he’s decided he doesn’t.

I love singing with the kids. Our house isn’t filled with traditional kid’s songs. They’ve picked up a few at preschool but a bedtime sing-song is more likely to feature Bruce Springsteen or Taylor Swift.

I’m thrilled Caleb has developed my love of Springsteen. When I first introduced him, “Booce” became Caleb’s word for music. I could sing anything if I said it was Booce, (unless it was “The Lion King”; Caleb knows everything from “The Lion King”). Over time he has developed some understanding and he now notices if I try to fool him with some Lyle Lovett.

Ellie Mae is not bothered, but she enjoys a sing-song and I love singing to her.

So we’re in Disney World, she’s upset, and I sang her a song:

“I came by your house the other day, your mother said you went away”

And then I realized that’s what happened; she went away. She walked to school on her first day, but five weeks later we took her in a wheelchair. She could count with you to 20 but then couldn’t get past three. Then she forgot our names.


So I’m in the DWAYCEBB, Ellie Mae on my lap, singing a song and crying because she went away and there was nothing I could do. I doubt crying is common at the buffet. Maybe some regulars shed a tear at closing, but it’s probably not a frequent thing.

But this morning, she recognized me. We sat on the sofa watching “My Friends Tigger & Pooh: Super Duper Super Sleuths,” which is what we watch if we’re up before Caleb. I put my nose to her nose and said, “Morning, gorgeous.” She looked at me and put her hands on my head. That’s a cuddle from Ellie Mae.  She’s always been the most loving girl and she loves a cuddle.

She spat out, “Da!” and that’s enough for me. Who wants a chatterbox for a child?

This post originally appeared on Cycle to the Circle.

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The 3 Words That Put My Daughter's Diagnosis in Perspective

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We never knew where Zoey fell on the autism spectrum. We had a second opinion today with a different pediatric neurologist who has just as many diplomas and degrees on his wall as the first neurologist we saw in August.

Where does she sit on the spectrum? That has always been my question and no one could answer me… until today!

Zoey has classic severe nonverbal autism.

I was praised for getting her diagnosed so early and was told she is getting more than most 2-year-olds as far as therapy goes, with great therapists. I’m doing everything I can do! I’m doing it right!

Then why does it hurt so bad? I went in there and said, “Yes, I know she has autism.” I never doubted that. I wanted to know where she was… because she can’t tell me where she is… she screams out of frustration and tries so hard to communicate and help us to help her, but it’s painful! Painful for us to watch her scream out of frustration because she wants to eat or drink but the words don’t come out and she can’t point to what she wants, so she goes to the kitchen and screams.

Yeah, I wanted to hear something different today… I wanted to hear, “I think it’s an inner ear issue that could be contributing to her lack of speech.” The answer was no to that!

I watched as she turned the lights off and on in the exam room, and when we moved the chairs, I watched as she moved them right back so that she could keep doing it. I then watched as I said, “All done,” and she screamed at the top of her lungs and then threw herself and had a meltdown in the room.

I finished with the neurologist and we said goodbye while she listened to Michael Buble’s “Lost” on my phone to get her to calm down. We walked out with the neurologist saying, “She has great taste in music!”

She held my phone as I got her into her car seat. I gave her the “blankie” and not long after she was asleep.

I called my husband and told him about our visit and he said, “It changes nothing.” That is the same exact thing he said to me with her initial diagnosis in August. As I cried into the phone, he knew why I was crying. I don’t care about the autism; I wanted to hear something else, something that went like, “Yeah, let’s check her inner ear to see if there is an issue contributing to the lack of speech.”

Why did I want to hear that? Watching your child throw herself on the ground because she can’t tell you she’s hungry or thirsty, or that her ears hurt her or she needs something. She can’t point or ask… she screams! Watching her scratch and dig at her mouth out of frustration, because her mouth can’t say what is in her head, what she wants or needs. I wanted someone to say, “We can help her with her frustration!” It is excruciating and heartbreaking. You see, I can accept autism, but the frustration that autism brings is not fair! I wish things could be easier for her.

She slept in the back as I cried in the front because I can’t take away that frustration.

I cried and tears were all down my face. I waited in line at the McDonald’s drive-thru to get her chicken nuggets, which I knew she was just going to eat around the crunchy batter and throw the chicken on the floor. As I waited, I remembered my husband and what he said…

“It changes nothing.”

She’s our child.

She has classic autism.

We love her.

I still wish I could ease her frustration.

Follow this journey on the Facebook page Life With Zoey.

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How My Brother With Autism Made My Wedding Unforgettable

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I remember my wedding day vividly for a number of reasons. I married the most amazing man who loves me for all that I am. Our wedding was planned with love. We spent hours crafting a ceremony that was perfectly us. We found poems and stories to include that spoke of our relationship. It was impossible for me to read the final draft of our wedding ceremony without tears in my eyes.

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Our bridal party included our dear friends and siblings. My brother, Jamie, was one of our groomsmen.  Jamie has been diagnosed with PDD/NOS and mental retardation. Sometimes Jamie was happy to be a part of our bridal party. Sometimes he told me that he was too nervous to be a part of it, but we talked him through it. We explained what would happen.

My husband, James, told him how much it would mean to both of us for him to be up there with us. James said he would have another brother. So Jamie agreed.

We’ve talked to so many people since our wedding day. They tell us how beautiful our wedding was, and how happy James and I were. But, without fail, the part that people remember the most is Jamie.

When the minister asked if the community around us affirmed our wedding, everybody was quiet, still listening. Into that silence, Jamie shouted YES. He didn’t hesitate. He shouted. YES. There was a pause, and then laughter. And clapping. Because Jamie’s declaration of YES was exactly what our wedding needed.

Jamie didn’t know that we would be asking for an affirmation, or even what that meant.  But he did know that that was the moment to say it, and if you’re going to say it, you may as well say it as loud as you can.  The ceremony stopped as everyone cheered for Jamie, who was grinning from ear to ear.  He didn’t stop smiling for the rest of the day.

I think back on this moment often. It was perfect. Jamie was perfect. We would have had a lovely day regardless of what happened; we were getting married! But the fact that Jamie took that day and really made his mark on it made it another thing all together.

Our wedding photographer managed to capture that moment after Jamie said yes. You can see our joy, and the joy of everyone around us. What better wedding gift could we have asked for?

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5 Reasons I'm Grateful for My Son's Disorder

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My sweet 7-month-old son, Fynn Tucker, is in the fight for his life. It’s a fight he has been fighting since birth, something we were told was just raspy breathing caused from still having a little fluid in his lungs because he was born via c-section. But I knew in my heart my son was battling the same battle his older brother battled years before.

Seven months later, countless tests, countless sedations and a 5-day hospital visit later, we’re still fighting. He was finally diagnosed with laryngomalacia in January 2015. He was also diagnosed with obstructive apnea and severe reflux in October 2014 and asthma in December 2014.

I have so many negative things I could say. I could express my hate in watching my innocent child struggle to breathe or quit breathing all together. I could write about all the negative things laryngomalacia has done to my family. But I would much rather turn this part of my life, of my son’s life, into a positive and talk about all the good things it has done…

1. It has showed me what a blessing life is. Life is so fragile that I won’t waste another second. I will cherish ever piece of my children, and for that I am grateful.

2. It has made my husband and me stronger. Watching your child struggle to live is an eye-opener and has taught my husband and me to work together… so for that I am grateful.

3. My son isn’t just a normal baby… he’s a fighter. He’s fought so hard in his first year of life that he is ready to fight anything, and for that I am grateful.

4. It has showed me who my true friends are… the friends who are there whether you have the time for them or not, the friends who visit the hospital when you are there for five days watching your child struggle to breathe… those are the friends I will keep in my life, and for that I am grateful.

5. I have met some amazing people among this journey, some people going through the same battle and some going through a different one. But regardless of their battles, they always keep a smile and love life and because of them, I have learned to put my faith in the Lord and found peace with God. I believe he did it so I could be his voice and fight for him, beside him, and I have been blessed to love him… and for that I am grateful.

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When a Simple Question From My Student Left the Whole Room Speechless

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I assist in a pre-K class that has students with “differing abilities” and then five “typicals” (students who require no additional resources).

One of our students, MJ, has cerebral palsy. MJ has the thickest darkest curly hair. I get the biggest smile from him when I run my hands through those curls. His smile brings one to my face as well.

At the beginning of the year, typical students who have not had one-on-one daily contact with kids with differing abilities tend to kind of step back, stare and ask lots of questions. By the time the first 30 days of school have passed, it’s like the kids have known each other forever. Speech teachers, physical therapists, teachers for deaf and hard-of-hearing students, and occupational therapists visit our classroom daily. We hear a knock and the kids look up and see which “helping” teacher it is and go back to what they’re doing. It’s like asking a student to pass a crayon; in other words, nothing out of the ordinary.

MJ’s mom is expecting a baby. One day she was in class and all the kids were asking about the baby. Boy or girl? Boy. Name picked out? Christian. When is the baby due? March.

Then one of our typical students, Susie,  looked at MJ and asked, “Is the baby going to be like MJ?”

Silence filled the air. All the grown-ups looked around at each other. I took a deep breath and was going to remind the children about what cerebral palsy is… but then the student who asked the question, Susie, piped up in a very matter-of-fact way: “If he is going to have dark curly hair like MJ, he better get used to having Ms. Murray running her hands through his thick curly black hair. Ms. Murray loves those curls. She says the curls are his hair smiling.” Susie went back to playing with MJ.

I couldn’t help but smile and shake my head. My thought immediately went to MJ’s differing ability, but this sweet classmate didn’t even have that on her mind. It was the dark hair with curls!

P.S.: Christian Xavier was born March 25… and he has a head full of dark curly hair!

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Here’s What You Can’t Take From My Son, Cerebral Palsy

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To Cerebral Palsy,

I had heard your name in passing but never blinked an eye. You were not important to me then, because you were not in my life and I didn’t expect you ever would be. But then you viciously barged into our lives 21 months ago and left an everlasting impression. I would rather not know you and I don’t like you one bit.

You turned our world upside down. Everything I thought I knew and planned for, everything I understood and trusted went out the door on the day my sons were born.

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My son has a name, and it does not include cerebral palsy as a prefix or suffix. But my son also has an identical twin, though they have been polar opposites since birth.

I have not reached the forgiveness stage just yet, or the time where I am ready to thank you, CP, for what you have taught me. I wonder what we are being taught by this hard, long lesson.

My boy had a catheter, a ventilator, a CPAP, multiple X-rays, multiple blood draws, a phenobarbital and antibiotic cocktail, an EKG, 2 EEGs with 24 electrodes glues to his tiny head, 2 blood transfusions, forced nutrition instead of breast milk, an MRI of his brain and constant monitoring of his heart, temperature and oxygen in his first week of life. He was in the NICU of a hospital with a different stranger every day for 25 days and his twin spent the first 25 days of his life visiting his brother in the hospital every day.

My boy cried 18 hours a day for the first 6 months of his life. He was diagnosed with colic, reflux and pain; we just tried to survive every day. It takes 1 to 4 hours a night to put him to bed because he can’t be left alone unless he is in a deep sleep. He has such spasticity that he arches so hard he bruises my arms, and carrying and caring for him causes physical pain many days.

He’s been to a dozen different specialists and continues to get three to five therapy sessions every week, from PT, OT, speech, swimming, Anat Baniel, chiropractic, craniosacral, cranial osteopathy, Musgatova and more. Because of you my boy still can’t ride in the car without screaming the entire ride. Because of you, it is easier to stay at home then to try to do anything that involving being out in public. My 21-month-old looks and acts like a 4-month-old, and is unable to hold his head up completely, roll over (unless accidentally), sit, stand, walk or talk.

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However, you have not taken Berkley’s spirit or spunk. He is by far the strongest person I have ever met. He is brave, resilient, courageous, smart, handsome, amazing and he has an awesome sense of humor.

You may have taken away the ability for his body to cooperate with his brain, but he works harder at everything then any person I know.

Ultimately, he just wants to be held, protected, loved and doted on. That has become my job for now and I wake up each day with hope that today will be better in all ways.

 

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